Dude...

Another long day at the hospital yesterday. Of course. We had a non stress test at 11 ad then after that, we had an ultrasound... You were NOT cooperative at all for either of the sonographers. Silly little guy. But the results were that you apparently weigh 5 pounds 2 ounces. That puts you in the 11th percentile for your weight and they aren't liking that at all. They want us to go for non stress tests 2 times a week now for sure. Soooo once a week, we go over to the hospital where we saw the midwives in Farrell and do one test there. Then we go for mother NST and our regular OB check up at Magee. I'm worn out. All this driving is making me crazy. You are so worth it though.

We need to fatten you up. That's our primary goal right now. I just don't know what else to do. In just a few short weeks, you'll be here and your fight will start. You're so strong though. And everyone loves you already... I'm sure you're gonna sail right through the surgeries and kick the crap out of HLHS. I know there will be twists and turns. I know it's gonna be rough for everyone, especially you... But you can do this bud. You can make it and grow up to kick the crap out of Zephyr and Ashton. I believe in you.

Today is your big brothers first day of 5th grade. He is super excited. I can't wait until your first day of school. I bet you'll make lots of friends and get good grades. No matter what dude... Mom is gonna be proud if you. You are gonna have to overcome a lot of obstacles your first years of life and that alone is a big deal.

I love you Luka. See you in a few weeks! :)

Lucky Luka,

Great job yesterday buddy! You put up with a lot from the doctors. After echos, ultrasounds and non stress tests, we had both had enough. It was a loooooong day but your prognosis is good. Dr. Sherman is optimistic you'll be ok after your surgeries. I'm so thankful for all the good news we got. Dr. Sherman saw 4 chambers...Your left ventricle and left atrium as well as your aorta are very hypoplastic but the doctor said you should be stable enough for me to hold you for just a few minutes before they start working on you. We got a picture of your perfect face. I'll post it on here.

We see the doctors every week now for non stress tests. We will have another echo at 36 weeks. It's gonna be a long few months but you're so worth it.

I love you buddy!!!

New Phone, New Pup, New Meemaw!

So little dude...I got a new phone. It's definitely not what I'm used to. I'm figuring it out. Technology is crazy. You'll end up teaching me stuff when I'm old.

We got a dog. She's a rottweiler. Her name is Maggie May. She is amazing.

Meemaw is coming around. We think she will be ok once her body gets rid of all the medications. Sha really had us worried.

Thirty two weeks buddy. We get to meet you very soon!! I love you. :)

Luka Man,

We got to see you again the other day. Got denied for a picture of your heart. The ladies excuse was 'The further along you get, the harder it is to see th heart'....Really? I saw it perfectly fine...I'm trying to save little mementos for you and this was an important one and that idiot lady took it away from me. Oh well. We have another ultrasound coming up.

You're growing big and strong. They are saying 3 pounds, 7 ounces. Keep it up buddy! You gotta be strong for your surgeries! :)

Mee Maw is in the hospital. I found her in her chair on Monday, nearly unresponsive. Her temperature spiked, her pulse soared, her blood pressure went down and her kidneys stopped working in a matter of hours...It was scary. This is the 3rd time this has happened. We are hoping for the best but we aren't sure that her body can take this again. I'm just sitting here, calling the hospital each day to make sure she's still ok. She's very critical but they've said she wouldn't make it before and she did. She's a strong woman...She can beat this again.

So many friends of mine are talking about buying baby stuff for their babies. All their babies are healthy. They will be able to take their babies home after 2 days...It wasn't supposed to be like this. We planned on having you at home. We planned on leaving you out of the medical community. No shots, no circumcision, no nothing. You'll still remain intact...Momma will make sure no one cuts your penis...But dammit, you're gonna be pumped full of medications and shit. It kills me. (I say bad words...But you won't read this until you're way older anyway...Plus, if you hear Mom and Dad, you know we have potty mouths anyway.) Anyway...I see everyone posting pictures of their baby stuff and saying they're going shopping for stuff...I can't help but be jealous. We aren't shopping for you. Not because we don't want to, but because I don't know what you'll need exactly when you come home. I have to weigh out your needs versus the things I want. I saw so many cute things I wanted to buy for us. Wraps so I could keep you close, cloth diapers...But those things have to wait...Because I don't know what size you'll wear or if you'll even make it home. I'd like to think you're gonna come home soon but I can't bear to think that if something should happen, I'd have to take all that stuff back to the store. I don't know. I'm trying not to be negative. I am positive and hopeful...But there is always a chance things won't turn out right.

I'm also sick of the 'Well, maybe it isn't as bad as they think' 'Maybe his heart will grow and he won't need surgery' lines. I wish...But I keep getting told this is a bad case. The docs are being realistic. No, his heart won't grow. It's as developed as it is gonna get. I'd love to say maybe you won't need surgery...But I know better. The only way you won't need surgery is if you don't survive until the surgery. :(

Ok. Enough negativity...I'm gonna go try to clear my head. See you in a few weeks!!! We're down to 10 but the doctors are saying they'd like you here around October 1st.

I love you so much already!!!

Love,
Mommy
Sent from my Verizon Wireless BlackBerry

Little Man,

Hey there handsome dude! :) I can say that now because I know what you look like already. We had another ultrasound. As much as I hate the idea of having to have so many of these things, it is nice to see you.

So here's the scoop: The doctors are very concerned but optimistic. Your aorta is very tiny and your left ventricle is severely tiny as well. They said it is going to take a lot to fix you up but they feel like they can do it. Basically, we are just gonna hope and pray that things go well. I mean, afterall, if they didn't think you would make it, they'd tell us right?

Things I have to remember to ask: What size is your aorta in millimeters? Do they think your septum is intact? Hmmmm...I'm gonna add to that list, I know. There were other things but I will have to look at my Facebook again and see what the other Heart Mommys asked.

They say you weigh 1 pound 15 ounces. That puts you in the 27th percentile for weight. I was hoping for a chunker. It looks like we might not get that seeing as how you only have a 2 vessel cord. But the doctors didn't seem too worried about it and it apparently doesn't have any effect on your prognosis.

Mommy is adamant about making sure you get breastmilk. I sucked at pumping for Z-Man. But hopefully, I make enough this time for you. If not, I asked the neonatologist if I could get my own donor milk. She told me no. I'm doing it anyway. I do not want you having formula. Breastmilk, even from another mother, is better than formula. I'll have to discuss this with the lactation consultant.

You got tons of people praying for you Luka. You can make it. I know it!

Meemaw had her pup Diesel at the vet yesterday. Well, Roscoe AND Diesel. Roscoe has bronchitis. Diesel has cancer. Diesel is a wonderful doggy. It's really sad that he's so sick. I like that big old dog a bunch. :(

Your brothers...Man are they ridiculous. I remember when I was a kid, I couldn't WAIT to wake up and go outside. I see little kids running around outside at 7-8am until 10-11pm around here...But Ashton...He just wants to sleep. Really dude? Wake up and enjoy life! Zephyr, as much as I love him, he's driving me nuts with his obsession with everyone needing to wear shoes all the time. Makes me wonder what you'll be like as a toddler and as a 10 year old. :) Betcha you'll drive me just as crazy as your brothers. In all seriousness, I really love my boys so so much. Being made insane is just part of being a parent. :)

Enclosed is a picture of your face (kinda). You kept shoving your face into the placenta and kept putting your hand over your face. Silly baby. Oh, and you look so much like your brother Z. :) I think that's neat!

Love you bunches!!!
Mommy

Sent from my Verizon Wireless BlackBerry

One Month...

It has been one month since you were diagnosed with Hypoplastic Left Heart Syndrome, Little Luka...One month yesterday, my whole world stopped. I couldn't blog this because we were celebrating Father's Day...And I didn't have the words...

Daddy felt you kick for the first time on Father's Day...One month after your diagnosis. It was pretty cool. :) Daddy thought it was neat.

I keep meeting up with all these Mommy's online that have sick kiddos. I keep thinking how awful it must be to have a baby in the hospital hooked up to all those machines...How scary it must be for those parents and those poor little babies...And then reality sets in. I'm gonna be in that position in a few months. I'm going to be that worried Mommy who won't leave your bedside for days because I want to take in every precious second I have with you. I watched a video on YouTube of a mommy holding her baby that they knew only had hours to live because he had Anancephaly. (I think that's how it is spelled.) And all I could do was cry...And say 'I don't want to hold my baby as he dies. I can't lose my Luka. He can't pass away.' I'm crying even now...My heart sank. I can't imagine that Mommy and Daddy's feelings as they held their baby boy while he took his final breaths. What that little boy had was way more severe than what you have. His is a brain and skull deformation, yours is a heart problem. His condition meant certain death. Your condition can be fixed.

We go down to Pittsburgh on June 27th to meet up with the doctors and to get another ultrasound. Then August 14th, you are going to get another ECHO on your heart. It's getting closer and closer. How do you even prepare for something like this?

Mommy and Daddy have yet to set up your room. I wonder some days if we even should set up your room because we don't know 100% for sure if you are coming home and when. Not that I don't have faith in you...I just have a whole range of emotions on my mind that vary day to day. I'm sure by the time it's close to delivery, I'll be putting the final touches on your room. :) It just takes time to absorb all these things.

I think you know I'm blogging because you're wiggling like crazy in my belly. :) Mommy loves you so so much!

I have so much more to say but for now, I'm gonna post this and go play with your brothers for a bit and then make dinner.

Love you!!
<3 Mommy
Sent from my Verizon Wireless BlackBerry

Luka,

Sorry Mommy has been gone for so long. I just haven't had the time to sit down and write this. We finally moved into our big house! :) It's so nice here. I can't wait until you come home and see it. Things are really starting to come together here. I betcha you'll like it too.

Nothing really new to report here. We were going to go to Philadelphia for your care but after weighing the options, we decided Pittsburgh was the better choice for everyone. We want to be closer to our family and friends because support is very crucial through all of this. We are a very close family. I talk to your Mee Maw on a daily basis just about and being 6 hours away from her would kill me. I have a ton of friends who can come rescue me if I need a break from the hospital for a while that live close to Children's. I know the area...Your brother's school will be more accessible. And Dr. Sherman is an amazing doctor. He may not be the nicest guy in the world but he has a very difficult job. I can't expect the guy to be all happy-go-lucky as he is sitting there telling parents their unborn child has a serious heart condition.

You're in good hands Baby Boy. I love you so very much! Keep getting stronger and growing bigger. I'll update again real soon. Tomorrow, we have a midwife appointment. Our first since your diagnosis. :) Wonder what Miss Cheryl and Miss Jan have to say? I'll let ya know.

Love,
Mommy
Sent from my Verizon Wireless BlackBerry